Delivering advance care planning support at scale: a qualitative interview study in twelve international healthcare organisations

Dixon J, Knapp M

Journal of Long-term Care 2019, October, 127—142

Available online 4 Sep 2019

Abstract

Context
Globally, populations are ageing, with people increasingly likely to die with chronic progressive illness. In this context, there is widespread interest in advance care planning (ACP), where people are supported to think about and express preferences concerning their future care. However, to date there has been limited systematic implementation.

Objectives
In a purposive sample of 12 international health and care organisations working to provide system-wide ACP support, we examined organisational aims, leaders’ perspectives on the economic case and promising approaches for efficiently delivering ACP support at scale.

Methods
In-depth qualitative interviews (average 13 in each organisation) with leaders, ACP specialists and front-line staff.

Findings
Organisational aims for ACP support were multiple and complex; they included optimizing patient and family care, supporting staff and mitigating risks of complaints from bereaved families, reputational damage, poor staff morale and potential legal challenges. The economic case comprised intrinsic benefits for patients, families and staff; averting costs associated with potential risks; and making best use of resources by reducing reactive care and provision of unwanted, low-value treatments. A degree of staff specialism, team-based delivery, use of decision aids, group-based facilitations, public health approaches and supportive parallel system changes and initiatives appear likely to support the efficient and effective delivery of ACP support at scale.

Limitations
We recruited organisations using snowball sampling. Quantitative information was inquired about to complement data from interviews but availability was limited.

Implications
ACP support may be usefully understood as both an individual- and system-level intervention. We identify various approaches for delivering ACP support more efficiently at scale.